Veronica's Story

I was 14 years old when I was diagnosed with Crohn’s disease, a chronic, incurable inflammatory bowel disease (IBD). For two years, my doctors played around with different doses of steroids and antibiotics, but nothing helped control the inflammation. They then started me on an immunomodulator to help reduce the swelling of my intestines. But that didn’t work either.

I was in and out of the hospital, my hair fell out, I was incredibly sick, and my parents and I were terrified. At age 18, I went to an adult gastroenterologist. He said he was astounded that I wasn’t on a biologic, given how advanced my disease was. I now believe that my doctors followed the treatment protocol outlined by our insurance company, a process they call step therapy. I am angry that my doctors didn’t fight to get me on a more aggressive treatment, and I can’t believe that an insurance company would have so much influence over my care.

My new doctor immediately prescribed a biologic; unfortunately, my Crohn’s was so advanced that I had to stop taking it in order to have surgery to remove my ileum and two feet of my intestines. Then I built up antibodies to the biologic, rendering it ineffective. For four years, I tried more antibiotics and steroid therapies, but they never worked. I was in and out of hospitals, and in and out of bathrooms so much that I couldn’t pursue a professional career.

In my mid-20s, my doctor prescribed a new biologic. It took eight months fighting with my insurer to get treatment approved. That was frustrating, but after just six months on the medication, I felt like a completely new person, finally able to work full-time, go on vacation, and pursue college. Today, I have a master’s in public health and am working at a job I love.

My life is wonderful, but I have struggled thinking about what I might have avoided – hospitalizations, surgeries, steroid side effects, and an impeded life trajectory – if step therapy wasn’t the norm. That’s why I am advocating alongside the Crohn’s & Colitis Foundation in raising awareness of the California-passed step therapy reform laws, and calling for the U.S. Congress to pass step therapy reform, so that all patients with private insurance have access to an expedient and medically reasonable appeals process.

Learn more at www.crohnscolitisfoundation.org/steptherapy.

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